Tag Archives: sleep

Doctor, my wife tells me I stop breathing in my sleep. A lot.

Me, wearing a full face mask, attached by a hose to a Philips BiPap system
Me, wearing a full face mask, attached by a hose to a Philips BiPap system

In early October, I hurt my back, presumably while lifting my son out of his car seat (to be honest, I was lifting a lot of stuff around then, and anything could have done it).  I scheduled an urgent care appointment with my doctor after it didn't clear up for a few days, and was affecting my ability to work, and function. Becky's been bothering me for months, maybe years about my snoring problems, and that I wake up gasping for air most nights. I've always got something more important to do than go to see the doctor, but when I get hurt bad enough to make doing all those things unfeasible, suddenly, I must re-prioritize. So I was given a handful of muscle relaxers and some halfway decent painkillers, and was going to be sent on my way. The PA-C who was looking at me asked if I had any other troubles. I finally decided to say it. – "My wife tells me I stop breathing in my sleep. A lot." She said that she's not supposed to treat non-urgent issues during an urgent care visit, but this was an easy enough referral, so why not?

The next day, I get a call from Troy Sleep Center, letting me know they got the referral and asking me to come in for an appointment. I think the appointment was sometime in November. I stopped in before work and took care of that appointment. The questionnaires I answered had all sorts of benign sounding, but almost certainly a sign of something truly menacing questions (do you wake up with a headache? Have you ever fallen asleep while driving? etc). I've always had sleep problems, ever since I was a newborn, so I could answer a lot of them with "yes". The doctor comes in, asks a few questions, and schedules me for a sleep study on December 5th.

Me, wearing EEG probes and chest strap sensors for a sleep study
Me, wearing EEG probes and chest strap sensors for a sleep study

If you've never been to a sleep study, I'll tell you – it's kind of cool but odd at the same time. I came to an office building at night (parking was really nice, obviously), and was led through interior hallways within the office. They opened a door to an office, and inside was suddenly a completely different world. It looked like a person's bedroom. There was a bed, a nightstand, high pile carpet, draperies, even a TV set. And a night vision camera. And a few subtle wires draped over the headstand. The guy told me to get into my pajamas (honestly, my wife had to buy me something because I don't ordinarily do pajamas, but you don't want to go naked through an office building, so…). They came and had me follow them to a room where they set me up with all sorts of wires. After that, they hooked me to that umbilical of cords draped over the bed, tossed a pulse oximeter on my finger, and told me to have a nice rest.

I don't know if you've ever tried resting at 9pm with glue in your hair, wires attached to random extremities, wearing what feels like two seat belts across your chest… I'm not going to sugar coat this – it's not fun, or easy. I think it's ultimately worth it, but I'm not going to sugar coat it and tell you it was awesome. And for my trouble, the guy just pulls the leads out and sends me home at 5am, telling me they'll be in touch. No feedback, no nothing.

So I have to wait about a week for my followup appointment. The doctor comes in the room, asks me if I know what obstructive sleep apnea is. Of course I do. So she tells me that's what I have (duh), and that I stopped breathing between 40 and 90 times an hour. Not during the test, but PER HOUR. 40 was the overall score, 90 was when I was sleeping on my back (I love sleeping on my back, but I've been prohibited by Becky from sleeping on my back for forever, because I stop breathing in that position more than others).

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So you are having trouble sleeping. Have you tried sleeping with wires glued to your head? No sweat? Let's try it with the wires, a mask and tube, and we'll blow air in your nose!

She gives me a diagnosis of "Severe Obstructive Sleep Apnea" and sends me off for a second sleep study to calibrate the CPAP device. I get my study scheduled for 12/29 (yay, holidays!). I go through the study. it was kind of uncomfortable, but doable. I get woken up and sent on my way.  January 3rd, I come to the office, and my doctor walks into the room. He looks at the sheet, and says something along the lines of "Do you know what central apnea is?" … "Yes. It's where your mind doesn't send signals that you should breathe at all".. "Yes, that's what it is". He hands me a sleep study showing that all my obstructive apnea events basically became central apnea events instead. My body was like 'OH HELL NO' and regularly would not fight the pressure of the machine to exhale.

Damn, and here I thought I did good. I mean sure, it was better than nothing at all, which is scary to think about, but it was clearly not tolerated. My diagnosis was changed to "Severe Complex Sleep Apnea", and sleep study #3 was scheduled for last week. That time, I used a BiPap, and the following Monday, I got a call from my home health care company telling me they were going through insurance company pre-authorization for my BiPap unit (the doctor hadn't called me yet). Today, I was given the results (apparently bilevel pressure of 12 and 9 was perfect, with an AHI score of 0), and picked up my unit (which is considerably more expensive than a standard CPAP device).

So you may be wondering: "Hey, what is a BiPap? I've heard of CPAPs, those just blow air into your nose all the time to keep your airway open, but I've not heard of a BiPap before."

A BiPap works by detecting your breathing cycles. Where a CPAP mask basically leaks any air you're not currently breathing in, and normal people can just breathe against the pressure, I can't. The BiPap detects that I'm no longer breathing in, and switches the pressure to a lower value – enough to keep the airway slightly open, but not so much that I can't breathe out. It then waits for negative pressure in the mask, and switches the pressure up at that point. If I fail to breathe in a certain amount of time, it kicks on the pressure anyway, assuming my airway is blocked, or I'm undergoing a central apnea.

I'm really excited tonight. It may be the first time I've slept well since I was 15, when I first started complaining to doctors about being tired all the time, and the doctors checked every possible thing, but never referred me to a sleep doctor.

How do you feel about drugging your kid?

It's no secret that our son has sleep problems. I had (hah! okay, so HAVE) severe sleep issues, and he does too.

We followed all the rules. Feed him early, give him a pre-bed snack. Bathing (not generally a relaxing experience for anyone around here). Warm "milk" (for us, it'd be rice or almond milk, as he's got casein and soy allergies). Making the whole house quiet before bed. Reading stories. Withholding nap time. Waking him early. Tiring him out.

Generally, he'll go to bed around 1-2am without assistance. Unless we have a long, dark car ride (for me these days with severe complex sleep apnea, these are really dangerous to do, so that's not happening – my sleep doctor's directives currently state that I should not be driving late at night) he'll usually be up and active the whole time. I often joke that the US could be independent of fossil fuels if we find a way to tap into his energy.

So after discussions with his doctor, we use an as-needed dose of Melatonin at night (we call them 'Magic Gummies', as they are in gummy form, like his vitamins), for about a year and a half now. I also use it periodically – while I have little trouble falling asleep at the wheel, I have problems falling asleep at night – in part because I use so much caffeine to stay awake and effective during the day. Yeah, in my case it's a self destructive loop, and I'm seeking medical intervention for my complex sleep apnea (3rd sleep study tomorrow, maybe it'll be the one where we find the right machine and settings for me!). But when I was a child, I had more or less identical sleep issues, so it's not JUST the caffeine.

Anyway, so it works great, and his teacher, aide and therapists can tell when he's been using it, and when we've had to get him to sleep naturally. But that doesn't stop people from judging us for using it. People give us looks of disapproval, or ask stuff like 'do you really have to drug your kid?' or *insert anecdote about someone else here*, then some judgmental comment about drugging him. Not just acquaintances, and friends, but family. It sucks, and it's stupid, and hurtful.

We've always treated it as a privilege, not some sort of punitive consequence. In fact, if he's been 'bad', we make him do something good to redeem himself in order to get one – like pick up a toy, or get mommy a glass of water, etc. They don't have a negative stigma attached here. We've never overtly told him what they're for, but that they're a special treat for 'good boys' on 'special nights'. We've gone out of our way to avoid saying what they're for, lest he protest taking them because he wants to stay up and play.

Lately he's been kind of warily asking for them proactively. I told Becky I suspect he knows what they are for and recognizes his need for one. She was skeptical, but tonight I asked him offhand – 'do you know what the magic gummies are for?'.

He says 'they help go night night'.

Damn right they do, kid.

My kid knows he needs help to fall asleep, and actively seeks it. I couldn't think of a more powerfully obvious statement of self advocacy than that.

So how do I feel about drugging my kid? I feel great, because I know I'm helping him satisfy a basic human need that he is now directly articulating his need for. I feel like our choice to give him this powerful tool to help him sleep has helped him behaviorally, educationally, and has soothed him when he was tired, sore and weary. And that our feelings that he would approve of the use of them if he understood what they were for have been validated.

I'd be off to take a magic gummy myself, but due to my upcoming sleep study (I'll have a whole post on this mess soon, once it's completely dealt with, because boy, it's been a long, strange ride) I'm not supposed to be doing that, so I'll go lie down and hope sleep comes quickly. Goodnight, all!